Sitting down for an interview with a mother who has lost a child is a daunting thing. The questions need to be delicate; the tone is typically and understandably somber. Yet Monica Forte, who lost her 12-year-old son Tony in February 2018, sits down for her interview wearing a beaming smile that immediately puts everyone around her at ease. She is fun, and feisty, and her love of her family and her mission to continue her son’s legacy of helping others shine brighter than the hardships she’s endured throughout his illness.

Doctors diagnosed Anthony “Tony” Vesuvius Forte with Hirschsprung’s disease, a condition that causes problems in the colon and digestive system, only six days after his birth. “They had to remove his entire colon,” Monica explains, “so he had an ostomy bag and IV nutrition. For a mom to hear you can’t feed your baby… that is horrific.” While some cases of Hirschsprung’s are reversible with surgery, Tony’s case was so severe that the only outcome was the eventual need for an organ transplant.

Monica put her career on hold and became a stay-at-home mother to Tony and his two older brothers, Vincent and Dominic. “I basically had to become a nurse for him,” she says. The central line and port where Tony’s artificial nutrition entered his body easily became infected, requiring frequent trips to the hospital. “For the first four years of his life, we figured out about two, two and a half years we lived at Penn State Children’s Hospital. And that was living there 24/7, never leaving,” Monica recalls.

As he grew older, Tony “was not able to go to school,” Monica continues, “and he was not able to eat freely, like going to the refrigerator and just pulling something out. The remaining intestine was very, very sick. With the artificial nutrition, he had to wear a backpack pretty much 24 hours a day, seven days a week.” By the age of 11, Tony required a six-hour surgery resulting in the transplant of four organs—his stomach, small and large intestines, and his pancreas.

The story of the Forte family isn’t about the adversities they went through, however, as much as the fortitude and positivity with which they went through them. Monica fought tirelessly to make sure her husband and three children lived their lives to the fullest and allowed Tony to live the best life possible. She remembers thinking, “How are we going to survive this? Taking care of the family and not falling apart? Because that’s what happens.”

“We didn’t make him feel sick—that’s the thing,” she says. “We never made him scared of the hospitals. We never left him alone. It was either myself or my husband tag-teaming duties.” While in the hospital, the family spent time helping others, often taking Tony’s lead. “Gosh, his spirit!” Monica laughs, “He was just such an inspiration to people. He was never a stranger— he’d go up to somebody randomly and just ask questions … and they’d end up becoming a family friend.” Tony was selfless, often donating his own gift money to other patients on the floor of his hospital.

When he was allowed out of the hospital, Tony served as a spokesperson for the Gift of Life Donor Awareness Program and rode in the Make-A-Wish Mother’s Day Convoy, helping to raise money for families in similar situations. The Fortes also spent time together taking trips to Tony’s favorite places, especially Gettysburg (he was a history lover) and Walt Disney World. In fact, the family remarkably visited Disney 60 times in eight years!

Although Tony’s transplants were successful, complications from the immunosuppression drugs required after his surgery eventually took his life. Since her son’s passing, Monica has dedicated her time to helping other families in need, drawing from her own experiences dealing with hassles from employers, mortgage companies, and insurance companies.

“How are we going to help these families?” she asks, passionately. “There are a lot of laws that need to be changed in our state. The red tape needs to be cut from social programs that limit these families, because some of them are denied. We were almost denied! We have a home, we have our cars, we worked hard for everything— but nobody’s planning to have a child that gets sick, so what do you do?”

Monica has created a memorial fund, “In Memory of Tony’s Footsteps,” to honor Tony’s legacy of helping others. She also plans to start a grieving mother’s group, as well as kickstart a pediatric transplant campground similar to the one that Tony stayed in during his transplant recovery—a project that was particularly close to Tony’s heart. She hopes to accomplish all of these things while continuing her career as a travel agent specializing in—you guessed it— Disney vacations, including Make-A-Wish trips for children like Tony. “That’s what Tony would want… I’ve got a heck of a lot to do,” she laughs. “I don’t know if we’ve got a lot of time, but we’re gonna make the most of the time we have. I know we can do it.”